Post 10: How do we make our University autism friendly?

Welcome to week 10.  I'm looking forward to meeting you all tomorrow and excited about starting the Autism Spectrum peer mentor scheme.

This week will be my final weekly blog post.  We can look at ways of using the blog to share information with each other once we have begun the AS peer mentor role. So, this week we will explore if and how we can make our University autism friendly.

There hasn't been a great deal of research into supporting students on the autism spectrum in Higher Education in comparison to supporting students in school. Recent articles do however focus on the views of autistic students rather than trying to second guess what is needed to make Universities more autism-friendly, which is a move forward.  I've shared some of these articles in the Useful Resources section below.

Perhaps one of the most important factors in creating an autism-friendly University is to have staff and students who are knowledgeable and supportive of students who are on the autism spectrum. As highlighted throughout the blog posts, it's important that we use an 'autism lens', to try and understand the individual person and their individual needs rather than trying to develop a "one size fits all" toolbox. Disability awareness training has been highlighted as a key to ensuring inclusive practice. World Autism Awareness day could offer opportunities in providing education and awareness of the autism spectrum for staff and students.  This may be something we want to think about later in the year as we get closer to the April 2nd date.

Another barrier for students on the autism spectrum is the environment, particularly for those with sensory processing difficulties.  Steve Mee who until recently lectured at the University of Cumbria talks about his first meeting with an autistic student called Cornish in his book 'Lives with autism' (available as an ebook through the library).  He says:

“Cornish was quite clear about what he needed. He asked to see the route to the classroom, the classroom itself, the seat he would have… We visited the classroom and he chose a seat in the corner as he likes to have his back against the wall. The fluorescent lights were a big problem so we hoped for sunny days during the course. The shades and wide-brimmed hat were not a style statement (another neurotypical judgment of mine) but a way of reducing the effects of artificial light”

While some authors recommend that there are alternative spaces for students on the autism spectrum to reduce the risk of sensory overload, other have concerns that this may isolate them further. While this may often be the way that disability support is provided, this is not good practice. For example, registration days or Freshers fair may be particularly difficult as they are noisy and crowded. Students could be offered a peer mentor to accompany them, or perhaps a similar event could be available somewhere quieter?

The law states that Universities have a duty not to discriminate against anyone with a disability, either directly or indirectly.  It says they must make 'reasonable adjustments' to remove barriers and encourage inclusion.  These can include individual adjustments such as support in lectures or seminars e.g. a note taker, being able to access lecture notes and handouts in advance as well as taking exams in a separate room where there are less likely to be distractions, with extra time, use of a laptop or scribe.   In 2010 the Equality Act was introduced which put greater emphasis on Universities taking an anticipatory approach to reasonable adjustments rather than an individual adjustment at the point of need. For Universities to do this they need to develop inclusive learning teaching and assessment practices.  For example, many students on the autism spectrum find group work difficult.  They may request a reasonable adjustment that means they can be assessed in a different format, and this is often dependent on the lecturer's flexibility.  An anticipatory approach could be that the University allowed all students a choice of assessment methods.  This would mean that the number of requests for individual reasonable adjustments would decrease.

While a University can put in place reasonable adjustments and work towards making teaching and learning inclusive, research shows that many students on the autism spectrum find the non-academic aspects of University life more challenging than the academic aspects, for example managing the social environment.  The transition to University is especially important for students on the autism spectrum who will arrive at University to a change of routine, a new environment and different social expectations.  Many Universities now offer summer schools where students can meet academic and support staff, stay in University accommodation and familiar with the campus.  Have a look at this article 'Helping students with Asperger's prepare for University life'.

In addition, many Universities now offer specialist AS training to their peer mentors, which I'm excited to be part of here at the University of Cumbria. Research shows that a peer mentor can successfully support the mentee with social, academic and daily living skills.  In addition students accessing such a scheme are less likely to drop out of University and more likely to achieve higher success.

One of our  Learning Disability nursing lecturers at the University, Austin Dorrity, is working towards making out University autism friendly.  Reflecting back on all you have learned about the autism spectrum you will realise that this is not an easy task, but with more people like you who are keen to learn more about AS and support fellow students we will make positive steps towards it.

Further resources

These articles are available through the University library:

Cai, R.Y. and Richdale, A. (2016) 'Educational experiences and needs of Higher Education students with autism spectrum disorder', Journal of Autism and Developmental Disorders', 46(1), pp. 31-41.

Sayman, D.M. (2015) 'I still need my security teddy bear: experiences of an individual with autism spectrum disorder in higher education', The Learning Assistance Review, 20(1), pp.77-99.

Mitchell, W. and Beresford, B. (2014) 'Young people with high-functioning autism and Asperger's Syndrome planning for and anticipating the move to college: What supports a positive transition?, British Journal of Special Education, 41(2), pp. 151 - 171.

Cullen, J.A. (2015) 'The needs of college students with autism spectrum disorders and Asperger's Syndrome', Journal of Postsecondary Education and Disability, 28(1), pp. 89-101.

Contact

If you have any queries or concerns you can contact me directly at lesley.english@cumbria.ac.uk 

For general queries relating to the peer mentoring scheme contact peermentoring@cumbria.ac.uk

Post 9: Autism and girls

Welcome to week 9.

This week will explore autism in girls: how it presents itself and some of the explanations why prevalence rates for females is so much lower than for males.

The National Autistic Society (NAS) state that 5 times as many males are diagnosed as being on the autism spectrum than females (this is supported by a range of research - have a look at the section on Autism and gender here). But why is this the case?

A good way to introduce this topic is to look at this short video featuring pupils from Limpsfield Grange, the only school for girls with autism in the UK, which gives an insight into the difficulties faced by girls on the autism spectrum.

Many experts in the field believe that girls are able to mask the difficulties associated with autism, that they are able to mimic the behaviour of their peers. Generally in society there is a higher expectation on girls to be more social than boys and research has shown that many girls on the autism spectrum are more socially inclined than boys - they get involved in social play (but are not usually the ones to initiate it).  They may have one special friend. However, they tend not to engage in social 'chit-chat' as many females do.

Rosanna Rosetti - for more images click here.

While boys may have distinctive special interests, girls interests are often similar to other girls, for example, animals, soaps, celebrities or classical literature.  The difference is that they may be obsessively focused on these.


Diagnosis

So, why are there more boys diagnosed with being on the autism spectrum? Research by Tony Attwood, Lorna Wing and others theorize that girls and women are often just not referred for diagnosis, even though they need support just as much.  Some personal reports state that this is because girls are seen to cope.

Many believe that the diagnostic criteria is heavily biased towards how boys and men present, for example, their behavioural characteristics.  This has led to many experts in the field calling for the diagnostic questions to be altered so that girls and women on the autism spectrum are not missed.  You can listen to Dr Judith Gould discuss late diagnosis and mis-diagnosis in women from BBC Radio 4's Women's Hour here (scroll down to 'Aspergers late diagnosis).

Other experts in the field, such as Simon Baron-Cohen, have proposed an 'extreme male brain theory'.  To find out more about this, click here.


Mental health issues in girls on the autism spectrum
Many practitioners state that mental health issues arise as many girls feel that they need to repress their autism as a way of fitting in.  This can result in depression or eating disorders.

"The fact that girls with undiagnosed autism are painstakingly copying some behaviour is not being picked up on and therefore any social and communication problems they may be having are also overlooked.  This effort of mimicking and repressing their autistic behaviour is exhausting, perhaps resulting in the high statistics of women with mental health problems" (Dale Yaull-Smith, NAS, 2008)

Research by Simon Baron-Cohen in 2013 goes some way in demonstrating that girls with anorexia have 'elevated autistic traits' (you can read about the research here).


Personal accounts

As I have said throughout these blog posts, the best way of understanding the autism spectrum is to listen to or read personal accounts, those 'lived experiences'. One of the most well-know women on the autism spectrum is Temple Grandin, who was born in the 1940's and diagnosed with autism as a child.  She was one of the first to write an 'insider' narrative about living with autism in 'Emergence: Labelled autistic' (available in the University library here).   Have a look at her TEDtalk 'The world needs all kind of minds' below.

More recently in the media there have been a number of articles written by or about women diagnosed with autism.  Have a look at this article in the Guardian by Nicola Clark who was diagnosed in her 40's. Another interesting article, which focuses on mothers who have been diagnosed themselves after their children gave received a diagnosis, is available here.

Useful resources

To find out more about the UK's only school for girls with autism, have a look at this article in the SEN section of  Guardian.


If you sign up for a free trial of Audible you can get access to a great book called 'Aspergers & girls' by Tony Atwood, Temple Grandin and other experts in the field.

Another book which I have mentioned before and found really interesting is by Laura James who was diagnosed recently with autism aged 40+.  It's called 'Odd girl out: An autistic woman in a neurotypical world' (again, with a Audible trial you can get this for free).

Finally for this week, to find out more about the experiences of Temple Grandin you can watch the feature film about her life.  

Contact

If you have any queries or concerns you can contact me directly at lesley.english@cumbria.ac.uk 

For general queries relating to the peer mentoring scheme contact peermentoring@cumbria.ac.uk

Post 8: Meltdowns

Welcome to the blog post for week 8.

This week the blog will focus on meldowns - what they are and how we can support someone who is having a meltdown.

Many people on the autism spectrum have meltdowns and this can happen whatever age they are.  To those who know little about autism, a meltdown can look like a tantrum.  This can be particularly difficult for parents of children whose apparent behaviour doesn't seem appropriate for their age.  As autism is an invisible disability it can appear that the child is naughty, or the parents are unable to discipline their child.  Here's a short video by the National Autistic Society showing a young boy in a shopping centre in the build-up to a meldown.

According to the National Autistic Society a melt-down is:

"... an intense response to overwhelming situations"

Once a meltdown has started the individual is unable to control their behaviour.  They may shout, throw themselves on the ground, kick, hit, bite or throw things.  They may self-harm.   It can be extremely distressing for the individual as well as those who are with them.  

A meltdown is caused by high levels of stress which may be caused by sensory overload (we looked at this back in week 2), difficulties with social interaction, unexpected changes to the routine, too many demands being put on them - or a combination of these.  Sometimes these stressors have built up over a period of time (hours, days or even weeks).  It's important to remember that people on the autism spectrum tend to have higher levels of stress and anxiety than a 'neurotypical' person, and so have less room to cope with any additional stress.  Once they reach the point of a meltdown it is very difficult to get away from that point for some time.  

Some individuals will have learnt coping stategies to try and avoid meltdowns, for example, removing themselves from a situation that they find challenging, or avoiding certain scenarios altogether.  

Have a look at this video in the National Autistic Society series 'Too much information' which shows a group of young people on the autism spectrum discussing their experiences of meltdowns and the reaction of people around them.

What to do if someone is having a meltdown:

Autism West Midlands gives some tips on supporting someone who is having a meltdown (see the full guide here):

• Get to know the person you are supporting, as each person will need to be supported in their own way.
• If they are not at risk of harming themselves or other, can you leave them alone to come out of the meltdown in their own time? 
• Keep calm.
• Do not ask them too many questions.
• Rather than telling them to calm down give them some guidance on how to calm down.
• Consider whether to use their special interests to help them relax.

In addition you may want to try to create a quiet, safe space for them.  Try to reduce any information overload by turning down any brights lights and sounds such as music or the TV and asking people to move along.

John Scott Holman, an autistic author, wrote about what people shouldn't do when he is having a meltdown (see the full article here):  

• Do not become angry or raise your voice at me
• Do not attempt to restrain me.
• Do not ask me what is wrong.
• Do not taunt me, use sarcasm or attempt to make me feel guilty.
• Do not ask me if I am on drink or drugs.
• Most importantly, do not tell me to 'snap out of it'. 

Useful resources

The University library has a book which I enjoyed reading - Donovan J, and Zucker, C. (2016) In a different key : The story of autism.  New York: Crown Publishers.  There's a Guardian review of the book here.

I've also been recommended a book called 'A boy made of blocks' by Keith Stewart. While this is a novel  the author himself has an autistic son and draws on personal experience.  

Finally for this week, there's a film/ documentary that I've been told about called 'Life, animated'.  This is the true story of a boy diagnosed with autism aged 3, and how through Disney films he was able to communicate with his parents.  The trailer is below:

Contact

If you have any queries or concerns over the Summer you can contact me directly at lesley.english@cumbria.ac.uk 

For general queries relating to the peer mentoring scheme contact peermentoring@cumbria.ac.uk 

I look forward to meeting you all in September.